What a wonderfully pleasant site this is. Being one that has a timid personality already, it is hard for me to reach out for advice. I feel welcomed here before even posting.
I will try not to make this long. It is my fiance that is undergoing the "process of elimination" treatment. Since the neurologist has for sure said it is neurological, my fiance will hardly tell me anything on the health front.

This is how it all began....about a year and a half ago, he started with a slurred speech. He WAS (Give God all the Glory) a heavy drinker, so we blamed the speech problem on that. June of 2011 he put the beer down and has been sober ever since. Since then the speech has become worse (very nasally and extremely strained).. In August '11 he went to his GP, who in turn sent him to a ENT. All test done with ENT were clear, so off to the neuro he goes. First round of test were a MRI of the brain and blood work for MG. MRI - clean, blood work came back negative. Second trip to neuro - CAT- Scan of the chest and another round of more intense blood work. CAT-clean, blood work-neg. But, the neuro put him on mestinon to try for 4 weeks. The mestinon made the speech worse and twitching in his eyes. So off of that medicine. Third trip- EMG of left arm-dirty. Then the doctor performed a SFEMG of the forehead. It showed something, not sure what...but the doctor said it was not normal. Now the doctor wants him to start on 60mg of prednisone for 4 weeks. Finally (after two weeks dealing with insurance company) got this prescription filled. Since the last visit at the neuro, he has started with excess saliva. He will not tell me, but I hear him when he swallows and I will watch his throat muscles and you can tell he has a hard time swallowing. He is left handed and he hardly can open a pepsi can, sometimes he can not open it at all and has to use his right hand. He said the other day, he had pain in his throat but it was more skeletal than muscle pain.

He has no double vision, no fatigue in the muscles (if anything more stiffness), no droopy eye lid. The speech is not "only when tired", he wakes up with it.

My questions are: If this is MG, is it possible for the mestinon to make the MG worse? Can a person have MG and not be fatigued? Does MG effect the hands? Is the pain in the throat common?

Thank you for reading and please know ahead of time, your responses mean so much.

Welcome to Neuro Talk. I am glad you decided to post, and took a look around the site. You did find some good people here to help. These kinds of neuro problems can sometimes be the most difficult to diaganose. The list of symptoms he has mimicks so many different kinds of neruo problems. I would also consider a Gastroinerologist, GI, doctor, to rule out any throat problems, that would cause swallowing difficulity. I know all the search for answers is difficult. You will find lots of support while you search for answers. Just don't give up. Eventually there will be a doctor who will put all the pieces together for you, so that at least you will know what it is. Have you had more than several neurologists look at your fiancee'.? A disease specialist is another option, that some people do go to for another opinion. In the mean time I wish you all the best. I hope that alot of people will respond to you. I will keep you both in my thoughts and prayers, and hope that you can find an answer and some kind of helpful treatment. ginnie

Hi. Welcome. I'm glad you're here and asking questions. Your fiance is so lucky to have your support.

I have a few general answers to a few of your questions.

I am diagnosed with MG even though my blood tests came up negative. I was diagnosed on the basis of my SFEMG--but not until my third one. I don't take Mestinon. I am convinced it doesn't help me, though it helps a lot of MG patients. On larger doses, it makes me twitch, and it gives me cramps in my eye muscles. Like your fiance, I don't have droopy lids or double vision.

Mestinon can make MG symptoms worse if you take too much. What is "too much" varies wildly from patient to patient. How much was he taking? Did he try a much lower dose?

MG can certainly affect the hands. As for throat pain, that is not typically on the list of symptoms, but MG messes with the muscles, and strained muscles can cause pain.

You ask if a person can have MG and not be fatigued. The answer is not really (unless it's only ocular MG)--but a person can be fatigued and not realize it. MG fatigue can be so general, and creep up so gradually, that you don't know you have it. You find yourself wondering "Why am I so lazy?" and "Why don't I feel like doing anything?"

One more thing. This may or may not be MG, but you and he must be very, very careful. Trouble swallowing is considered a medical emergency. MG can tank really fast--it can go from "gee, I feel worse today than usual" to life threatening in an hour. If he is having trouble swallowing, he needs to let his neurologist know right away. If it gets worse, he needs to go to the ER. If he starts having trouble breathing, he needs to go to the ER or call an ambulance. I don't mean to scare you, but MG is unpredictable and can move really fast.

Prednisone can make MG symptoms worse for a couple of weeks before it starts helping. If he is starting Prednisone now, while his symptoms were already worsening, you need to take the symptoms very seriously. I know this is hard--you seem to be saying that he doesn't like to talk about how bad it is. But he needs to know.

Please feel free to ask more questions. It's helpful to us to feel helpful--we like to see that some good can come out of our experience with this disease!

Abby

Hi Seacoasthalo!

I am NOT a doctor -- nor do I have any medical training whatsoever. But, your fiance's symptoms sort of sound "familiar". Has the doctor mentioned ALS? In the beginning, it is VERY hard to tell the difference between MG and ALS. In fact, sometimes it takes MONTHS before they can figure it out.

I am hoping and PRAYING that ALS is QUICKLY eliminated as a possibility. But, as I've recently been told by several members of this group -- KNOWLEDGE is "power" -- so, on the "off chance" that this might be what you are dealing with...............you might want to wander over to the ALS forum and repeat your post.

You and your fiance will be in my thoughts and prayers!!! And, PLEASE keep us updated -- we really DO care!!

Awe, Bless you Ginnie and Abby!! What a comfort. I felt so much better finally getting some questions out and then the replies bring so much relief Just speaking about it out loud (if you consider this out loud and I DO :-) is a relieving feeling.

I will try to answer both of your questions in order:

"Have you had more than several neurologists look at your fiancee'.?"

He has seen two different neurologist. The first one did the MRI and mestinon. Then that doctor referred us to MG/ALS specialist in our home town. This neuro is very active in ALS and has numerous patience with MG. (According to him) So, I feel we are in great hands. I am unsure of how many patients (in both ALS and MG) he has that start with speech problems. Getting my fiance to go to another doctor may take an act of congress. He has never been one to get sick or go to a doctor, so this alone is a daunting feat. I cant get him to go back to the neuro to describe the worsening of his conditions.

Mestinon questions: " How much was he taking? Did he try a much lower dose?"

He start on 60mg, three times a day then lowered to only twice a day. After this is when he was taken off. What is the "norm" dosage?

It was said that the swallowing and breathing (He has told me and I have noticed him getting out of breath easier, but this comes and goes) is serious, that is what scares me. This man is like all others...stubborn and will not admit to feeling any discomfort. I am frightened of it getting to a very serious point before he does anything about it. I can't seem to impress upon him how important all this is. He says he is just "getting older" and these symptoms are age related. He is only 48.

How long after starting the prednisone should it take to start seeing a difference? He is scared of this drug and getting him to start it has been a fight too. He gets upset because he is being treated for something he has not been diagnosed for. Through reading it seems without clear indication of blood work, this is the right step to take. I have heard of the tensilon (sp), have any of you had that?

Bless you both for such warm welcomes!! What wonderful ladies you both are. I am giddy inside to have found you both!!

Hi Jana!! Yes, the neuro has mentioned ALS. And I may just go on and repost over there. That is the scary side of all this. Without fatigue, eye problems, and neg. blood results for MG...it is frightening. When you say familiar, are these symptoms you have?

I so appreciate this. I have kept this bottled up inside and this is such a relief!! THANK YOU ALL!!!

It's great that he's seeing a doctor with experience in both ALS and MG.

Here's what I know about Mestinon doses. Yes, 60 mg. at a time is the typical starting dose. Mestinon has a really short half-life. About four hours after you take it, it's already working only half as well. That's why when people go to their doctors and say that the Mestinon works well, but only for the first couple of hours after they take it, the doctor will increase the frequency instead of increasing the dose. If 60mg was too high a dose for your fiance, I don't know if that would mean he'd feel stronger after it wore off a bit or not.

I know this is emotionally extremely hard, both for your fiance who is strong-willed, and for you who have to struggle to get him to go to a doctor. Being undiagnosed, with scary symptoms, is emotionally brutal. You feel like if you just knew what was going on, you could be strong and face it, but how can you face it if you don't know what you're facing? I hope you get answers soon.

Abby

Thank you so much, Abby!! Yes, it is emotional roller coaster. This helps talking to others. I will be more firm with him after today. Hearing these responses, I can no longer tell myself it isn't that serious. Reading that some of the more serious symptoms can come on within an hour is eye opening. I thought this was more gradual.

When he took the mestinon in an hour he sounded worse. He actually sounded better and then would get worse again once he took his next pill.

This entire experience is eye opening. I always thought...you go to the doctor, they tell you what is wrong, you then fix it. Nope...not like that at all!!

Thank you, again!!

When I said "familiar" -- I wasn't talking about myself -- but, about a young man whose blog I followed for several years. He had Bulbar ALS.

Here is good website that describe the symptoms:
http://www.buzzle.com/articles/bulbar-als-symptoms.html

I'm praying REALLY hard that ALS is NOT what your fiance has!

Yes, keeping things bottled up is NOT good -- and it sounds like maybe your guy doesn't want to talk about it much?? We'll be here.

BTW, several members have been diagnosed with Tensilon. It typically has to be used in a hospital setting -- there can be side effects -- heart problems, I think. But, I have heard of ALS patients responding to Tensilon, so, I'm not sure if it would confirm MG in this case.
http://neuromuscular.wustl.edu/mtime/mgdx.html

Hello.

I wanted to let you know that I started out on 60 mg two times a day and it was way too much, made me twitch all over and made my muscles so tight I had difficulty bending my body to sit down. It was scary. I am one of those people who only needs a very small amount of Mestinon, the most I can tolerate it one 60 mg pill split up and taken in small amounts through the day. Currently I am taking 1/8 of a pill at a time and this works best for me. I suspect that if I had taken three pills in a day I would have ended up in the hospital. We are all different as far as dosage needed.

I also get worse symptoms if I take a full pill, it is too much for me, maybe he is the same. Maybe his doctor will give him permission to try cutting the pills in halfs or fourths. When I was taking full pills I was at my best shortly before the next pill, but even then I was better off than without mestinon at all.

I hope this information is helpful.